Coach's book to help children deal with brain tumours

Hawthorn Football Club coach Peter Schwab wishes he had never been given a reason to launch a children's book about brain tumours at the Royal Children's Hospital yesterday.

Sadly, Mr Schwab and his wife Jenny, whose seven-year-old daughter Emily died from the condition six years ago, did not have a choice in the matter.

"None of the 50 or 60 Victorian families whose child is diagnosed with a brain tumour each year wants to get on a rocket ship that takes them on a journey of surgery, MRIs (magnetic resonance imaging), chemotherapy and radiation treatment," he said.

The travelling metaphor is central to Billy's Rocket Ship: travelling through the galaxy with a brain tumour. The book, by special education teacher Lisa Buchner with the hospital and the Children's Brain Tumour Association, will be used to educate classmates, friends and siblings of sick children.

Ms Buchner said the book, the latest in a series on chronic childhood illnesses such as asthma, epilepsy and diabetes, grew from her experience as a parent of a sick child.

"Each page sees Billy travel that bit further, and his rocket ship becomes longer as more support people come on board," Ms Buchner said. The main character's feelings about his diagnosis and treatment are explored through activities, which include designing a bravery medal and drawing in Billy's mouth to show his emotions.

Ashley Irwin, 13, whose brain tumour was discovered last November, said the book would help his classmates understand his experience.

"They've asked me what an MRI feels like," he said. "I told them it was like a big waterslide."

The book has already been helpful to his sister Loryn, whose schoolmates initially told her that her brother would "become a vegetable" or "have a hole in his head", according to mother Belinda Irwin.

Mr Schwab said he had worried about Emily, diagnosed 10 months before her death, hearing incorrect or additional information at school.

"We never spoke about death... but you sense sometimes that they know more about what might happen than you think," he said. "You can't hide the facts, but at the same time you can't look as though you're defeated. ...As a family, you've got to be strong and positive and look forward.

"You've got to ask all the questions you need to ask to satisfy your own understanding."